Ice Cream Headache without the Ice Cream!

Disclaimer:  Oh hey.  Yeah.  I’m not a medical professional or anything.  I’m not being compensated nor am I suggesting this is the right option for you.  I’m just a girl trying to keep her hair during chemo and I want to share what I know and my experience.  There are other companies that provide the same type of therapy in different delivery systems.  I can only speak to my experience with Paxman. (     

Have you heard about the treatment option for some patients that stops CIA?  I’m talking about Chemotherapy-Induced Alopecia, not the Central Intelligence Agency…

During my initial visit with Dr. Lori, she mentioned this treatment possibility.  The Hubs and I were intrigued, but had other things to focus on first.  If there was a way for me to be in control of something during treatment, I wanted to check it out.  Dr. Lori said that she recommends it to most of her patients.  We had to investigate further.

For more than 20 years the Paxman scalp cooling therapy has made a change in expected hair loss for chemo patients.  It has been widely used outside of the United States with incredible results.  Multiple clinical trials with thousands of patients show astonishing results with patients keeping a lot of their hair!  Paxman received FDA approval for the US in 2017 thus paving the way for easier access for those of us here.

So how does this thing work?  Again, I’m not a doctor or a medical professional, but what I do know is that chemo attacks rapidly dividing cells.  Hair just happens to be the second fastest dividing cell and that is why many of the chemo drugs cause hair loss.  The Paxman cold cap (aptly named, by the way) decreases the temperature on the scalp which reduces the blood flow to the hair follicles in turn preventing hair loss!  WHAT!?

In my opinion, one of the most challenging things for women when faced with chemo is the high possibility of hair loss.  I’ve seen it impact one of my closest girlfriends. Let’s be honest, it is gut wrenching.  “Get a wig!”  “Wear some cute scarfs and hats!”  All well-meaning sentiments, for sure.  At the same time, I can’t deny noticing the effect of hair loss on total strangers.

You know what I’m talking about, right?  The silent stigma that comes with CIA.  Listen, I’m guilty of not knowing how to interact with someone that I suspect is receiving chemo treatments.  Do you look at them sympathetically?  Give a sad smile and nod?  Or avoid eye contact together?  Pretend not to notice?  Isn’t it odd how having hair or not having hair changes how we think we should or should not interact with someone?  Am I overthinking all of this?

For me, I want to be in public and not have anyone that doesn’t know me suspect I’m in the middle of a health battle.  Not that I’m ashamed of what I’m going through.  Is it vanity that makes me want to keep my hair?  Maybe, but I don’t think so.  Studies repeatedly show the negative emotional impact chemo induced hair loss has on all patients, not just women.  I just want something to be as normal as possible.  I don’t want to wait for years for my hair to grow back out.  I don’t want to catch a glimpse of my baldness in a mirror or window reflection.  I don’t want to look at pictures years down the road and be reminded.  I want to go about my day and not have people wonder how they should interact with me right now.  Is it OK if I want to avoid the silent stigma?  Why does it feel like a privilege or luxury to want to keep my hair and my dignity?

There are many thoughts and opinions on those last two paragraphs that might require a separate post.  For today, I want to share my experience with Paxman.  Cool?  (See what I did there?)

In the beginning, the prep and process can seem daunting.  I was so blessed to have a Paxman training specialist on site to help me.  (Thank you Rebecca!)  Trust me; it made a world of difference in my confidence in using the thing.  It is important to get the process right or it is for naught.

Being cold is high on my list of least favorite things.  First I thoroughly wet my hair down in order for the cap to make good contact with my scalp.  Then I use a wide tooth comb (like the gigantic ones we used to shove in our back pockets back in the day) to slick my hair back. Next I don on a futuristic silicone swim cap and then top it off with a cosmonaut looking space cap.  Stylish, it isn’t.  Once the cosmonaut neoprene cap is on, it gets synched down tight.  Like really tight.  My face gets squished down until I closely resemble a deranged Hobbit.  No offense to Hobbits, especially the deranged ones!

The cap is then connected to a machine that keeps the temperature of my scalp at a consistent -3000F (slight exaggeration) or some such thing.  Once turned on, it is like an ice cream headache without the the fun of eating ice cream!  So now I have a wet head, this crazy machine is cranking really cold fluid through the silicone cap.  This is not what I consider “fun”.

This is the time to get all wrapped up, Buttercup!  A friend blessed me with a beautiful softy blanket that I wrap up in.  Along with that is what The Hubs calls my Outlaw Josey Wales wrap.  After the first 20 minutes or so and a dose of Tylenol, things get much more comfortable or maybe tolerable is the right word.   Perhaps my brain is so frozen it doesn’t really realize what is going on!

The cap remains in place before, during and for a period of time after infusion.  Once my hair defrosts enough to remove the caps without breaking off my hair, I ever so carefully take them off and continue on my merry way.  It is quite the experience.

There are other factors like how to care for your hair that play a role in the success of this therapy.  Special shampoo, no styling tools, no braiding, pulling back in a bun or ponytail and limiting the washing frequency are all key parts in the overall picture.  I sleep in a cap to keep me from tugging on my hair during the night.  So far I’ve had very little hair loss.  In all honesty, I believe it isn’t any more than I would be losing without being on chemo.  I’m taking pictures weekly so I’ll update the post with them.  Who doesn’t like a little show and tell?

Even though I had people tell me I should just get a wig instead of taking on the expense of a new treatment option, just getting a wig wasn’t the right option for me.  Again, I know the comments were from a place of love and good intentions.  In the end, all of it is temporary.

Thrive Through It!

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5 Responses to Ice Cream Headache without the Ice Cream!

  1. wow i did not even know that such treatments existed – I am truly blessed because of you !

  2. Tiffany says:

    This was a wonderfully, informative post Brenda! You are a great writer! I love you and am praying for you everyday!

  3. Right back at ya, Little! Thank you for following me & all of your support.

  4. Julie says:

    You make me smile so big. Love you woman!

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